anxiety is taking over

[BusyLizzie100]

Does anyone have any ideas on how to cope with a seven-year-old (eight in Dec) with a diagnosis of Asperger's whose anxiety is totally taking over every aspect of his life - and ours?

 

He cannot bear for any member of his family to be out of his sight - he's terrified that they have 'gone' if he doesn't know where they are. Even around the house, he is constantly shouting out for Mum or Dad, even if he's with the other, as well as his two brothers, one of which has ASD (nearly six) and the other who is three.

 

It's got so that we are permanently glued together, all five of us, or he has a major meltdown involving genuine terror and despair - he has on occasion even been sick.

 

He seems to cope at school, but school is fairly oblivious to his issues. After the London bombings pupils were warned that parents might be late home from work and so late picking them up from school (we live in Hertsfordshire), so he went absolutely mad, thinking his dad was never coming home again. And how did I hear about this? Not from school, but from the mum of his classmate, who heard about my son's distress from her son and asked me if he was OK now.

 

He puts on a huge effort to cope with everything at school, with no additional support and at home he seems to let it all go. Fair enough, up to a point, but over the summer he has found it really difficult to cope.

 

We managed a summer holiday in Cornwall (now Mum and Dad need a holiday!) but he was distraught everytime we left the flat. He was unable to do any of the things he has enjoyed in the past, because his anxiety about this, that or the other gets in the way. Bizarrely, the ASD son did really well on holiday, coping with lots of new experiences despite extreme sensory difficulties - even going in the sea and enjoying being slapped in the face by waves!!!

 

All the AS son wants to do is stay at home where he's safe, preferrably glued to the computer or the TV, or with his nose in a book if technology is not on the menu. We really feel we can't do anything anymore, or go anywhere. In the past it helped to change family dynamics by splitting the kids up and doing different things with them, but now he won't let us out of his sight.

 

I know it sounds wierd that a seven-year-old can be so controlling, but he gets into such a state. Once he started hitting me in the park because his friend kept running away from his mum - he wanted me to make him stop so he starting hitting me because I wasn't doing anything (I was letting the other mum deal with her own son).

 

I've tried introducing coping tactics, like identify what colour that anxious feeling is, and trying to turn into a colour that he's already identifed as soothing, but in practice it just doesn't work.

 

This is making him so unhappy, stressed and miserable. For his sake and the sake of the whole family, we need to find a way to help ASAP. Any ideas?

 

Thanks folks.

Lizzie

[Viper]

Hi Lizzie,

 

I don't have any ideas but can sympathise. My son has Seperation anxiety disorder as well as other things and some of what you say rings very loud bells with me.

 

Ben worries when he is away from the house and wants to get back home and when one of the family is out he gets worried and asks when they are comming home.

 

Ben is only 4 (5 in a few weeks) and is not at school until next week, I am dreading it because he has to be away from us for longer than ever. I don't know how he will cope.

 

Viper.

[Brook]

Hi Lizzie, <'>

 

My nearly seven yr old son (ASD), suffers terribly with anxiety, up until we took him out of school it was through the roof

He too needs to know what everyone is doing, he also does not like to leave the room to go to the toilet as he does not know what everyone is doing whilst he is up there.

 

Over the holidays his behaviour disintegrated and he became highly anxious again, I have now put back into practice a timetable for the day, as I thought I would not bother in the holidays, but this obviously had an effect on him. I visually show him the schedule of the day, also what others will be doing and when they will come home, but obviously if things change then I can visually show him the change.

It got to the point that he would not leave the house unless I was going too, he would not even go out with my husband without me.

 

But Hey presto, today is the first day he has gone down to visit my husbands dad with my husband and other son . I am actually supposed to be giving the house a good going over while they are out, but couldn't resist a quick look on here .

 

Tightening the structure for my boy has certainly helped, of course he is still anxious, but not to the level that it completely takes over him.

 

Brook

[Flora]

Hi Lizzie, I don't have any answers but do have loads of sympathy and understanding. My AS son is 11 and we really are, with the best will in the world to be otherwise, very much controlled by how he likes things to be. It started with anxiety problems when he was younger, and now he doesn't want to do anything other than sit in front of his computer or play station. I can give you some hope though in that as they get older (and I'm really beginning to see this with my son) you can discuss these things openly with them and they gain insight in to how Aspergers Syndrome has an affect on their attitudes and reactions in comparison to others. He now is willing to accept that he needs fresh air, exercise and a break from technology. He isn't any more adventurous (though I'm praying he will get there eventually) but he is much more cooperative when we want to go some where or do something as a family. It isn't perfect, he still grumbles constantly on these occasions, but when I compare him to what he was like at the age your son is there is a significant improvement. Hope some of this helps in any way.

 

Lauren

[Zemanski]

I suggest you need to talk to your GP or consultant about this - your son may benefit from some therapy such as anxiety management or cognitive behaviour to help him cope and give him some strategies.

 

I know he is still very young but I thought about a mobile phone so that he could always contact you, even if he's out of sight at home, it may be a nuisance at first but he should gradually be able to realise that he can check up on you any time and begin to do it less frequently - one of those radio phone sets could be cheaper and I think you can buy sets of four or six so everyone can have one.

I would take advice on it first though - it could make the situation worse.

 

Zemanski

[oracle]

My son is 8 and at the moment his anxieties have gone into over drive. To be honest his autism is becoming more visible daily.

 

We have home educated Matthew for almost 3 years now and his anxiety levels dropped dramatically, but like Brook we have found that the school holidays have taken there toll on Matthew.

 

Matthew is often physically sick when he is distressed. In fact he suffers from something called Cyclical Vomiting Syndrome which can be caused by anxiety and distress. I dread to think how Matthew would be if he had to attend school at the moment? Although he did appear to cope on the surface underneath he was falling apart.

 

Could your sons extreme anxiety be related to the fact that school is almost, or in some areas, has began again? Maybe he knows that while he is at school he can not be with any of his family and so he wants you all where he can see you while he is not at school?

 

Carole

[nightingales]

Hi Lizzie,

You have my deepest sympathy, though I can't really offer advice at the moment.

 

Our son's fears centre on poisoning, especially by lead or yew trees. It rose to such heights a few months back that he wouldn't approach anything that his brother had touched, because he thought his brother had touched a yew tree (tricky, that, in a shared house, with shared parents!).

 

He still won't eat if his cutlery has touched the dining table, after husband soldered something there 18 mths ago (yes, we've cleaned it since; even I'm not that untidy). He's also terrified of being near a child at school who just READ OUT something about the plague...

 

As you said, it takes over your life... and outsiders can't see how they can be so silly.

 

Zemanski -- just how do you get advice on this? We too suspect that reassurance makes it worse. We've asked repeatedly what we should do instead, and so far the only response has been 'Hmm, hard to know what's best, better go on the list for OCD assessment'. Over a year later, we're still on the waiting list , and getting used to son removing everything from the dining table as soon as we've set it...

[oracle]

Both of my sons are totally phobic about saliva. They will never share a drink or even a cup. They both have their own cups and glasses with their names on. If someone spits while they are talking they go into meltdown and both totally hate babies because of their phobia They can't look at anyone who wipes their mouth with the back of their hands, or who licks their lips.

 

Yes it does impact on the WHOLE household. My eldest now takes charge of his own washing up to be sure that his things are really clean.

 

Carole

[Elanor]

Hi Lizzie

 

I do understand how anxiety can dominate your household, and make ordinary life impossible. Stress and anxiety seem to be so common in AS, and to vary according to what's going on around the child (which you can predict and identify) and what's going on inside his head (which is much harder to figure out).

 

Obviously you have to figure out what things are upsetting him, and address the things you can do something about - but that's only a part of it. You can't always help very much - although predictability, routines, calmness, reducing spontaneity, and careful coaching can do a lot. I went through this, and in the end it wasn't enough. In our case, my son's stress was expressed through aggression - although it could easily have been in depression, self-harm or withdrawal.

 

We sought help from our son's consultant, who seems to understand him, and he has our confidence, and eventually we went down the route of medication. I'm not saying this is the best treatment, but we still can't manage without it - and not through lack of effort or sacrifice on our part. There's some good threads on medication on this site - it might be worth having a look.

 

Elanor

[Zemanski]

mostly I ask for advice from the autism advisor here - she is excellent and I have personal contact with her so I can ask for advice any time. If you have access to an advisor or team I would contact them.

 

another option is to write to or email your child's consultant - ours will often give strategies or advise about the possible negatives of a strategy if we are specific in what we are asking about rather than asking for general support

 

the NAS or local autism support group (ABC here) can also advise on strategies.

 

there is a group I just discovered in Leeds that another parent told me about but haven't made contact with yet so I don't know what they are offering but this parent told me that they have been very helpful on advice about anxiety etc aand have helped them get their boy back into school. The group is autism partnership and I think they are comercial and have branches in other places but I was told that the LEA may agree to pay something at least towards the in-school support of this child.

 

the reason I suggested asking about the mobile phone strategy in particular is that it is not one I have heard of and, as someone else suggested, giving way to anxieties can sometimes exacerbate them so it seems a good idea to talk to someone before trying this sort of thing - if your child is likely to increase his need for contact with you through the phone, rather than developing the sense of security just from having the means to contact you and so gradually be able to stop having to actually contact you then it would be a very bad idea.

Ideally the phone would become a security blanket and replace some of the need for the security blanket he is currently using - ie you - but with such a strong obsession it might just feed the anxiety leading to a constant need for contact without the disincentive of having to interrupt what he is doing.

I feel I am on dodgy ground with this strategy - I would not do it without speaking to someone first.

 

Zemanski

[baileyj]

Hi, I am amazed at this thread, I was going to post today with a similar thing, so I can't offer any advise, but sympathy as we are in similar situation.

 

Max (4 & 10 mths) just wants to stay at home, on the PC or playstation. If I say shall we go to the park, he just says "no I want to stay here", and thats it.

 

I feel like a prisoner sometimes, we never go anywhere. Then I find myself feeling resentful and then guilt as its not Max's fault. I get so sick and tired of being at home. I do go out to work, and hubby is house-husband, but going to work is just another prison really, instead of my son ruling the roost, its the bosses here.

 

It seems Max feels safe at home, and no-where else. I would love for us to do things as a family, even simple things like going to the park, or a walk, but Max just refuses.

 

He too starts school in 2 weeks, and I am very worried, he's been there to nursery for the last year and is having the same LSA. I am hoping it will make him better at going out, as he's definately been worse during the school holidays, perhaps its the break in routine.

 

You get so low and fed up with it all, I know I do, sometimes just wish we could be a bit normal.

 

So, as i said, I don't know what to suggest, but deffo sympathise.

 

Jo

[oracle]

It's very easy as a parent of a child with an ASD for feed their anxieties. And it is also difficult to know when to try and push the boundries and when to give in? But I do believe that as parents we have a duty to try and expand the boudries of the self imposed prisons that our children appear to need. I say this not to provoke a reaction but because eventually our kids will live in a mainstream world and we need to try as hard as we can to prepare them for that time.

 

I know with my eldest that he would quite happily of stayed at home from the age of 3 plus. But then he would have missed a great many things that he can now enjoy. He had another four bad years from 13 to 16 when again he seldom left his room never mind the house. But we worked hard and gave him a reason to want to leave his room. This is not so easy when they are little because it is all about feeling comfortable and safe in their environement but I do know parents who have given into their children who now never leave their homes

 

I know that both of mine have good times and bad. I say time because when we are having a bad time, which we are at the moment with the youngest, it can last for many weeks. But eventually we will turn the corner again - I hope I tend to match my expectations of what is and is not possible these period when they are having a good or bad time. If we are on a good period that I go for it. If I know that their batteries are low and they need to recharge then I take it slowly.

 

How do we cope us parents? I ask myself that everyday - especially today which is NOT a goodun!

 

Carole

[BusyLizzie100]

Thanks for the replies, it helps to know that we are not the only ones!

 

We thought about the mobile phone thing, because N often asks if I've got my phone so I can ring my husband (eg when he's at one end of Sainsbury's and I'm at the other), but I've stopped short of getting him one. I don't think he's mature enough to be able to use it properly, to be honest.

 

He has an appointment for an assessment next month with a diagnostic team. I'm trying not to think too much about it because I am hoping for so much! It's not so much the diagnosis we need - his paediatrician has already said he has AS - but the support/intervention or just plain help that he needs. We're hoping they can help us deal with things at home, and give us the groundwork to start seeking proper support for him at school.

 

I agree that we shouldn't allow him to cut himself from mainstream life, after we all we have to live and he's too young to leave at home on his own! And he will, one day, have to cope in the world when he's grown up. It's just that this summer has been sooooooooooooooooooooooooo hard! Apart from anything, I love him to bits and it hurts so much to see him suffering. It's so painful for a mum not to be able to comfort her child!

 

Anyway, thanks again. Any further input welcome!

Lizzie

[Malika]

Hi Lizzie

 

I have similar pbs with my son who just been 8 in August he is very reluctant to do anything else than staying home and this seems to be on the increase he used to have terrible anxiety attack when he was 5 and this every single day at school when I had to leave him behind it was heart breaking as the school who just qualified him as being naughty.

 

The only strategy which I found helpful was to try to make him understand the notion of time to explain with calendar and time table as well as concrete event of the day (like lunch dinner bedtime) what is tomorow and "in 2 days time" when the week-end is going to come and the holidays he used to call the week-end "little holidays" I always explained to him as well where I had to go, if I had to leave him behind I would for ex tell him "my darling listen now mummy has to go out but she will be back before dinner to cook for everybody" and (fund useful at the time to use the third person refering to myself and his name or my sweety or darling refering to him) then I would explain that I would go to a particular place he knows, for shopping or to see the doctor, if I knew he did not knew the place I was going to I would just tell him I had to go to somewhere he knew well even if it was a lie . I taught him the day of the week and showed him calendar and clocks.

 

Now for the home pbs H for many years was convinced that I could see him across the walls may be thats why home was not a problem. Now somehow he seems much calmer, when I go out without him I always bring him a treat and give him lot of cuddles and kisses before and after.

 

I remember when he was six to use a talky walky at home and in the garden and make a good fun in desapearing round the corner in the garden while I kept talking to him; may be that whould work for your son make it fun make it a game (if possible), hide a treat may be and let him found it giving him instruction from another room. AS children have pb in understanding space and time that is why they are so scare of any changes I remember reading about a child who was obsess with death and the Dr explaining it was because death was bringing a definite change and would generate, as such, a terrible anxiety the only way that child had been able to cope with the thought was by making death a topic to "study". May be let your son draw a "map" of your home and colour it explaining and then asking him to show you where you cook where you sleeps... then telling him "In 10 minuts mum is going to have a bath" and then "Now mum has to have a bath show me on the plan where I am going to be ??" I hope some of this will work I manage to improve H understanding over the years but it was a very tiring and long journey not finish yet of course. Try as well to make cards with his favourit character Batman Spiderman put them in the corridor with harrows where he can write Kitchen Bathroom Mummy's bedroom and so on.

Good luck hopefully it will get better

Best wishes.

 

Malika.